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10 shocking facts that show what it’s like to be a carer

Carers' Corner

Author: Parkinson's Life editorsPublished: 9 June 2016

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Many carers face issues that have a devastating and lasting impact on their emotional health. We look at the last statistics from the Meeting of the European Parliament Interest Group on Carers

During Carer’s Week we look at the invisible work carried out by carers across Europe that is often labelled a ‘labour of love’. However, carers can face emotional, social, physical, relationship, financial burden, which can erode the balance and quality of family life.

Here are 10 facts that show the harsh reality of life for carers:

1. Worry and stress mean that a third of carers lack sleep and feel depressed.

2. 36% are sole carers, and nearly half never take a break.

3. 78% would like more respite care.

4. Of those that do take breaks, only 6-8% use unpaid respite care.

5. A third say that they are at ‘breaking point’.

6. On average, 22 hours are spent on care provision per week.

7. One in five carers is unable to see anything positive in their life.

8. Four out of 10 feel that medical and care staff take them seriously.

9. The majority (88%) of carers would like more information on the longer-term development of the illness of the person cared for.

10. Nine out of 10 would want opportunities to meet and share experiences with professional carers.

However, there are positive sides to providing care as more than half of the respondents said they had discovered inner strengths, met helpful people, learnt more about themselves and became closer to their families.

Lizzie Graham, executive director of the European Parkinson’s Disease Foundation, said: “Carers are the unsung heroes, and regrettably the importance of their role within society as a whole is not always recognised or acknowledged as it should be. Data such as this is vital, and provides the evidence that carers should be valued, cared for and listened to – and that now is the time for attitudinal change.”

The report states that throughout Europe demographic developments are rapidly leading to shortages of professional carers. In many cases the choice to become a carer is not a conscious one.

To find out more about the European Association Working for Carers follow this link

IN THE NEWS

Carefully selected news stories from the international Parkinson's community.

5 hours ago

Sniff test could detect Parkinson’s disease up to a decade earlier

A study has found that white adults with a poor sense of smell are almost five times more likely to develop Parkinson’s disease than those with a stronger smell sense. The research, published in the medical journal ‘Neurology’, found that there was not a statistically significant link between Parkinson’s and smell for black adults. Speculating on the reaction that people from different racial backgrounds had to the test, researchers said: “One possibility is that, compared to white participants, the etiology of olfactory dysfunction in black participants is more diverse and complex, and that Parkinson’s disease-related pathology is a relatively minor contributor.” The team emphasised that the findings should be interpreted with caution – and that further studies are needed before the smell tests can reach a clinical stage.

Spiral drawing test could detect early signs of Parkinson’s

Researchers from RMIT University, Australia, have developed a test that may be able to detect early Parkinson’s – before physical symptoms appear. During the test, participants draw a spiral using a tablet device, and computer software then measures their drawing speed and pen pressure to diagnose the condition. PhD researcher Poonam Zham led the study, published in ‘Frontiers of Neurology’, with the RMIT biomedical engineering research team. Working with Dandenong Neurology, the study involved 62 people diagnosed with Parkinson’s. Half had no visible symptoms and half ranged from mildly- to severely-affected. Professor Dinesh Kumar, chief investigator, said: “The customised software we’ve developed records how a person draws a spiral and analyses the data in real time. “With this tool we can tell whether someone has Parkinson’s disease and calculate the severity of their condition, with a 93% accuracy rate.” Image credit: RMIT University – Professor Dinesh Kumar and Poonam Zham

Asthma drug could halve chance of developing Parkinson’s

A recent study has found that a drug most commonly used for asthma may cut the chances of developing Parkinson’s. The research, carried out by Harvard Medical School, Massachusetts, US, found that those who inhaled salbutamol – a drug found in inhalers – were half as likely to develop the condition. In Parkinson’s disease, a protein named a-synuclein accumulates in various brain cells and can be fatal. To counter this, the research team grew human nerve cells and tested over 1000 medications, finding results to suggest salbutamol could cut the production of a-synuclein. Neurologist Anthony Lang, who works at the University of Toronto, Canada, said the results were “fascinating” and “had come out of the blue”. Despite some encouraging developments, Clemens Scherzer, who was a part of the research team, said clinical trials were “a few years off”.